We have a lot of events coming up for Getty Owl Foundation. Our agenda might seem aggressive and here is why: as a mother, my goal is to make sure that I leave this world better than I found it. To make a difference, I need people to understand SMA.
You need to know that 1 in 40 people is a carrier, which is over 10 million people in the US and, to this day, I am only aware of one non-SMA parent who knows whether she is a carrier. It is a complete shock to hear the news that you have basically given your child an unknown gene that will slowly rob her of the muscles and ultimately her life. Shock turns into anger because you immediately think, “Why didn’t someone tell me, why isn’t testing for SMA in the prenatal screening.” I went through some definite months of just being pissed. Too me, I thought, “Who isn’t doing their job?”
I had a really interesting conversation with a friend who is also a prenatal nurse, and she was telling me that she had never heard of SMA. Unfortunately, I lump all nurses together and so I was surprised to hear her say that. And then I got to thinking. If children aren’t actually diagnosed until after birth, well then that would make sense. She has done her job of taking care of the pregnant mother and, after the birth, SMA issues would typically be handled by some other medical professional.
I thought, “What kind of impact would it make for prenatal doctors to suggest SMA carrying testing to their patients?” They could at least let parents know of their options. Then the parents can can choose for themselves. I am not one to tell parents what choices to make for their families, but I do believe there should be choices.
I would have appreciated my OB doctor to discuss various tests before pregnancy. I would have liked to have a conversation about prenatal testing. We did opt for the usual prenatal test, but as we have learned now, SMA was not part of the screening. If it were then Mark and I could have had a conversation about what we wanted to do. Education is key. I went to college because I wanted options on what I wanted to do with my life. I think pregnancy is similar.
So having said that, Getty Owl Foundation is focused and passionate about all things SMA. We want people to be aware of Spinal Muscular Atrophy. We want people to know that they CAN be carriers. I want people to know that even though they already have healthy children, they could UNKNOWINGLY transmit the SMA gene to another child. I want people to know that SMA is a horrible disease that takes a toll on everyone involved; but in the same breath, there are proactive ways to care for your child.
Getty is a happy little girl and we are doing the absolute best we can to make sure her life is full of surprises and experiences just like any other family would do for their child.
I want people to know that 1 in 6,000 births is effected by SMA. 60% of SMA diagnosis is to a Type I child, the most severe. Our sweet Getty along with thousands of other warriors and angels are Type I. Too many babies are dealt this fate and we are going to do everything in our power to raise money to help find a cure for SMA. We will push down doors, we will educate, and we will prevail. Every day I look into Getty’s eyes and she motivates me to fight.
If you have some time, please take a look at our Upcoming Events page and perhaps you can take part in some of our events. We really tried to find events that were appealing to all kinds of interests. A baseball game, craft fair, walk, a round of golf, a run, and if you can’t make these events please consider making a tax-deductible donation.
Let’s Do This!
Kate you are such a fine example of a wonderful SMA MOM!!!! You are such an inspiration to all mothers, I am so proud of the wonderful things you are doing for SMA!!!! ~Catherine
Catherine, I simply can’t wait to meet you so we can just HUG!!!!!
Well said Kate!!!! I just wish people would listen.
Not exactly in our field of expertise, but isn’t SMA just one of a whole bunch of muscular and nervous system genetic bad stuff that couples contemplating marriage could be screened for? Kate has said that SMA is the one closest to a cure, which is a good reason to focus on it in the foundation fund raising, but when it comes to the foundation’s educational mission, maybe it would be good to push for a more general genetic screening? Just a thought. Since Mark is clearly a carrier, then at least one of us must be too. Mark is one of our three sons, all pretty healthy, and we have 4 other grandaughters besides Getty, also all pretty healthy. Guess we got lucky.
Love, Evelyn & Evin Stump (parents of Mark Storm)
It would be of no benefit to do a more “general” screening, as SMA doesn’t show up unless it is specifically tested for. My daughter had the “standard” 40 tests done when she was pregnant with my grandson, Charleston, and they told her he was healthy. Yet he was born just like Getty, with SMA Type 1. And yes, those of us with SMA babies, are very lucky to have them.
Thank You. I know now because of you.